LOL
Let's see what the Universe has planned for me....
In the meantime,
Friday, August 10, 2012
Out for a few days, don't forget me!
I just wanted to say that I will be out for about 10 days. I need some well deserved rest and relaxation. I appreciate everyone who has been coming by, whether "sutmblingupon" or visiting regularly, and don't want you to forget me. I will be back!
LOL
Let's see what the Universe has planned for me....
In the meantime,
LOL
Let's see what the Universe has planned for me....
In the meantime,
Wednesday, August 8, 2012
Radiofrequency Neurotomy for pain relief
It's been really quiet with my boys gone on vacation. It's RELAXING.... I'll admit, I feel kind of guilty....but it's a well deserved guilty.
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
Sunday, August 5, 2012
Physically, emotionally, mentally spent...
Sadly, I haven't been able to write for a few days. I've needed to but just haven't been able to. These days it just seems as if nothing is going right and as if nothing I do helps.
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
Wednesday, August 1, 2012
Follow up on my wrist...
I wrote previously about my first dislocation. Well, it kept getting more bothersome. Today I wasn't even able to lift cups or use my hand to push thing, like the coffeemaker; mind you, I have a pretty simple run-of-the-mill coffee maker, none of the stainless steel K-cups stuff. So I decided to go to the Urgent Care and have them take a look and do some X-rays. Better safe than sorry. If it was just a sprain then I had lost nothing and my mind would be at ease. But with EDS, nothing could end up being a huge something and require fixing that could end up leading to surgery.
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
Subscribe to:
Posts (Atom)